Wednesday, 27 August 2014

Just a quick bit of a post today. I do have one that I am writing and will also write a school one soon.

Things are not looking up on the school front. The initial meetings in the spring (other than the principal) were pretty good. Micah was supposed to be hand timetabled which didn't happen but was fixed for the most part. She got two of the courses she really wanted but they are in second semester. First she has math and drama. She had chosen English and hates drama which she had not chosen. She is now worried about being behind in English but I told her it doesn't matter when it gets done so that seems to be okay. Trying to get drama dropped and something put in for her to look forward to instead but no word from the school. They still seem to be refusing to meet with her before classes start and we haven't seen her homeroom set up yet either. We have done that the week before school started since she was in kindergarten. She hasn't been to school since January and just jumping in to a full day with strangers is not going to go well. The psychiatrist who confirmed the PTSD recommended half days but we are trying for full.

Micah's anxiety is growing and she is stimming a lot and with some that I have never seen before. It doesn't help that she is losing her entire riding group including her instructor as of this week. Just really bad timing but she will get through it. She will still have the horse she rides and she is in therapy right now so that should help.

It is a busy time of year so it is very hard getting help to deal with all of this.

Saturday, 16 August 2014

If you think your autistic child will never be able to do or get past a certain thing, you may be in for a surprise.

Micah has always been terrified of bugs of all types- flying or crawling. When we first went out in the spring time, there would be lots of screaming. I don't like bugs either. I can touch a ladybug and I can squish mosquitoes no problem but not other types. Until I had Micah, my husband's job was to kill all the bugs. Once Micah came along, I had to be the brave one so that she wouldn't be afraid!

Her fears were extreme. We had to call an exterminator one night at our old house because we had wasps coming in through a spot near the sump pump out spout. We knew there would be no sleep with the odd wasp flying around so, it had to be taken care of right away.

Until the past few months, if Micah spotted a spider in a room, especially her bedroom, she would avoid that room for a while. Having a spider in the bedroom was a really big deal. We could squash it and then do spider patrol to search the entire room. When she ended up with PTSD, her fears and avoidance got worse. A spider in the room meant Micah was spending the night in the tv room on the couch. It was very frustrating and most of the time I was understanding and I have definitely gotten better at it. I'm not perfect though and can still get angry.

The whole point of this post is that Micah is suddenly able to do things she couldn't before. She has been volunteering at the barn where we ride. She can easily lift the heavy feed sacks now. She also killed a spider on her own, in a stall! Nobody was around so she did it.

About a week later she killed a small black bug on her bed (not a bed bug!). I had to come and do the clean up but the main thing is she killed it herself! She also killed another bug another day but I can't remember where.

It has taken many years to get to this point so don't give up hope if your autistic family member/friend is not able to do something. It may be that they just can't do it yet!

P.S. We don't just go around killing bugs, but if they are in the house or car etc, then they get squashed!

Thursday, 7 August 2014

I am really struggling with time and getting things done. I don't seem to have too many extra things in my day but it is full. I haven't written a post here in a while and I have worked very little on my two other projects (they are a surprise). I will talk more about my other projects when they are further advanced. Right now everything seems to be in a holding pattern or moving backwards.

Micah has been volunteering at the barn weekday mornings, except on therapy days, so usually four mornings a week she is there. She is really enjoying it. She finished her forty hours of volunteering for high school in the first few weeks and she hasn't even started grade nine yet! She is doing well at it and getting stronger and braver. She can lift sacks of feed and even killed a spider one day when no one else was around to do it for her!

Last Friday, August 1, we finally got into our appointment at the Child and Family Clinic to see a child psychiatrist. We had been referred in December, when Micah was first diagnosed with PTSD by the pediatrician. The psychiatrist is in agreement that she has PTSD, so that is good but they only offer medication and CBT. We are taking her suggestion of increasing the one medication and discontinuing the other. She also agreed that since the equine psychotherapy is working, we should continue. We are noticing gradual changes especially at Micah's riding lesson. I know it will take a long time for her to get over the damage done to her at the Catholic school. Although she had lots of anxiety before her trouble there, she was happy most of the time. She is no longer as happy and definitely not trusting anymore.

Micah is struggling with a lack of friends. She has some distance friendships but the last friend on our street has stopped coming around. I don't know whether she has outgrown Micah, been turned by the other kids on the block, or whether it is something else. Micah is also losing another friend with whom she rides once a week. Even though the girl's mother says they will still get together, I know they are busy and the parents are divorced so it is not likely that Micah will see her much, if ever after the end of this month.

I don't know where all my time is going. I do my usual things each day but some days I just can't finish, especially if I have extra things like appointments etc. I think I am going to have to make a list each day after I have done each thing and document the time it takes, kind of like a time budget. Then maybe I can figure it out. Of course, that is going to take time too!

I have also been researching Ehler Danlos Syndrome EDS). I first heard about it after Donna Williams, an autistic woman I follow on Facebook, posted about it. I thought it was interesting and that is all. I started reading bits over the past year from her and also there was a young woman who did a parody of 'Let It Go' as an autism version. She made it after being diagnosed as autistic. I went to her Youtube Channel and website and discovered that she also has EDS. I started becoming a little more interested as I found a few other autistics with EDS. I began to wonder if they have a high comorbidity rate and whether I could possibly have it. I still wasn't entirely sure what it was other than the fact that people are hyperflexible, which I didn't think I was. I can't do the splits after all!

It wasn't until about a month ago, when Donna William's posted a video by a lady named Dr. Diana. She posts under the name, prettyill. I started watching her videos and discovered that I am in fact hypermobile. Here is her video on hypermobility type EDS https://www.youtube.com/watch?v=k4ob-Lf8sTo. I am now working on getting a diagnosis. The tears I have in my knees and my torn calf muscle would make sense, if I do in fact have this condition. Hypermobility is scored with the Beighton Score. I think I have the hypermobility type. I don't think my skin is too stretchy but I do bruise easily. I score at least a 5 on the Beighton Score- I can't check the degree of angle in my elbow or knees myself, I have double jointed thumbs (grosses Micah out!), lots of pain and various other issues including fibromyalgia. I fit the diagnostic criteria for hypermobility type.

My new doctor (we get residents so a new one every two years in July), said he will research it. My husband saw our rheumatologist, who said he can't refer for genetic testing. Based on what I have been told by local people who have been diagnosed, my best bet is to get a referral to the Mt. Sinai Wasser Pain Clinic and a referral for genetic testing at the same time at the same hospital and see which I get into first. I will need both anyway. The problem is there is no genetic test for hypermobility type yet but they would need to rule out the other types including the deadly vascular type. My father did die of an aneurysm but he was in his sixties so it is unlikely that he had it since most die by their forties. My mother was and my sister is hyperflexible so there is some inheritance there.

We can see where some of my time has gone missing, researching EDS!

That's about it for now. We are currently preparing for Micah's hopeful return to school in September.

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About Me

Some of my writing style and views on autism have changed since the beginning of this blog but I am leaving the original posts as is. The blog also has a Facebook page: https://www.facebook.com/TalesFromAnAutismFamilyBlogI am autistic and have anxiety and a learning disability. I ride as a para-equestrian.